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Wednesday, June 12, 2013

Heart issues and K level issues, but she is getting better!!!

We Believe!!!! Yesterday, we found some blood in Kayli's ear and we were afraid it may have been a sign that she had blood on her brain, but it turns out it is an ear infection! (phew!). Then when she slept last night, we found that her heart was skipping beats frequently. A quick call to the Cardiologist, and we were somewhat set at ease, hearing that it wasn't life threatening (although still a concern). Before going to bed last night, I stood by her side, until she started responding as I stroked her hair!!!! This morning, Kayli got a halter monitor ( a monitoring system for her heart rhythm), which she is wearing for 24 hours. This will give the specialist a better idea of what her heart is doing. Kayli is not completely herself, but she IS getting her feisty attitude back!! She has even started tracking us with her eyes again!!! She isn't squeezing our hands yet, but we are starting to see wonderful signs that she may completely pull through this! Her Potassium level came back critically low again today, and we are treating her at home for it. The IV antibiotics are working, and her wbc's are down. We hope to see better K levels in the morning when she gets more blood work done at the hospital. We will turn her halter monitor in tomorrow, and take her in for an echo on Friday. Thank you so very much for all your thoughts, love, and prayers!!! God is answering our prayers with grace and mercy!! He has Blessed us with another day with Kayli!!!

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥